Liam's Healthy Heart Party

So after a long wait we finally had Liam's Healthy Heart/Welcome to the World party on Sunday afternoon. We spent a long time waiting for Liam's lungs to clear of the fluid that built up there his first two months. Waiting for his cardiology checkups to finish. Waiting six weeks after surgery to get his vaccinations (an unfortunate side effect of being on bypass). If nothing else since Liam has been with us these past four months, he has taught us to roll with the punches, that things don't always go according to the script. Perhaps they rarely do. True to form Sunday was a cold, rainy day - a high of 52 that really felt like 45 if not colder. Thankfully we had an covered pavilion in which to hold our party. Liam was bundled up as were the rest of us, and he slept through almost the entire party. We were worried about the turn-out, but almost everyone came out for our little man.

Becca and Sammi: Our new friends.

We were fortunate to finally meet our mentor in the Down Syndrome community Rebecca Bates and her beautiful daughter Samantha. Becca is of The Bates Motel fame. She is a prolific blogger and an active member of the Down Syndrome community. (You can read her at http://thebatesmotel3.blogspot.com) Sammi is a total sweetheart with the bluest eyes you've ever seen. She looks a bit sad in this photo, but she had just woken up from a nap that she had just barely started. Who can blame her? Plus she was about to spend her second day in a row in the rain (click here for the story). Having been through the same ordeal of an AV canal repair for her daughter that we were facing with Liam, Becca helped us immensely as we prepared to turn our 7 week-old boy over to Dr. Jonas to work his magic. She prepared us for what Liam would look like with photos of Sammi in the ICU. She also showed us how good an infant looks eight days after open heart surgery. We got to talk about how amazing our kids are. We talked about the long scars that now permanently reside on our childrens' chests and compared their looks - Sammi's is wider than most, Liam's curves to the right at the top.

Nurse Eileen: Our rock from CNMC.

We were also blessed to have two other pivotal people in Liam's life join us. Nurse Eileen showed up unexpectedly. Eileen was our nurse navigator who helped usher us through the processes at Children's National Medical Center. She was a test program all by herself, and the embodiment to someone who is doing what they were meant to do in life. She even thought to bring us Starbucks and Dunkin' Donuts from outside the hospital (thank God) while Liam was in surgery and sat with us for a while and just listened as we tried to cope with what our boy was going through. Her warmth and compassion as we dealth with the longest two weeks of our lives made all the difference. We were so happy that she could join us and that she got to see how big Liam has grown and how healthy he looks since his time at Children's. Liam even greeted her with a warm smile like he remembered her. Jan Neuharth also joined us in the rain. She was the one who introduced us to Dr. Kurt Newman at Children's. This introduction unlocked a chaing of introductions that led to Liam's world class cardiology team. Without this one introduction, we shudder to think of what could have been. Lauren and I are eternally grateful for this one kind act that changed our world.

Thanks to everyone who came on Sunday. We sincerely appreciate it. It has always meant so much to us that we have had so many people keeping Liam and us in their thoughts and prayers. To be joined by so many on such a crummy day warmed our hearts yet again. I have put some photos of the party on my Facebook page. But here are a few starters...